Thursday, February 10, 2011

Holding true...

Are we who we started out to be?

Here - in its entirety - is the lead article from the third issue of Pathlight, published in November of 1990.  It was written by PHA co-founder Teresa Knazik and appeared under the title, Pathlight Grows...but it was about a lot more than that.  See what you think.

Welcome newcomers.  We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us.  Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.
Would those who have so generously volunteered their time and talents please let me know what skills you can offer?  Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this.  Please share any ideas that you may have to further our efforts.  We are hoping to incorporate before the end of the year, and our goals are: organize a national patients' association with regional and local support chapters. make Pathlight accessible to those who need it but cannot afford it. help family, friends, and each other understand the pain and fear we experience - coping. educate the public about our disabilities. promote awareness among family physicians who can aid in early detection. encourage research and become informed of research in progress. form a "collective voice" so that our needs may be heard among those who have more well known disorders.
As I was reading this article, the new issue of PHA's medical journal, Advances in Pulmonary Hypertension arrived.  In his editor's memo, Dr. Richard Channick focused on the Scientific Sessions held at PHA's Conference this past June - and the Conference itself - and he writes:
Not surprisingly, the evolution of Conference perfectly mirrors the growth of PHA itself.  The iconic image of 4 people sitting around a kitchen table has morphed into a major organization that provides a dizzying array of services to patients, develops and implements many invaluable educational programs and funds both basic and applied research.  A remarkable evolution!
PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.

Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight.  When you get to the page, scroll down to Back to the Beginning.


  1. I am proud to be a member of this vibrant organization!

  2. I am so happy to have become a member, since being told of my illness back in 2008 nothing was ever given to prepare me for what I would be facing. I have learn so much from reading your articles and joining support groups that I wish I would have known back then what I have learn today and what I continue to learn from you, thank you Marian Romero-Sessions

  3. Thank you for your comments. We move forward on this journey together.

  4. Thanks for Pathlight and the encouragement that it gives me. It helps me understand why every breath is precious. I sleep with supplemental oxygen, have had 11 LHC and 2 RHC with 7 artery stents and still do not have a PPH diagnosis. I have just been told it is mild and you have to live with it. Perhaps so, but these stories do encourage me and give me hope.

  5. I'm so glad these stories are helpful to you.